Government
doctors from the United States Public Health Service (PHS) found approximately
400 African American men presumed to all have late-stage, and therefore
not infectious, syphilis in and around Tuskegee in Macon County, Alabama
beginning in 1932. After some initial treatment was given and then stopped
because of lack of funds, the PHS provided aspirins and iron tonics implying
through deception that these were to cure the men’s “bad blood.” What
had started as a short treatment program became a study on the presumed “natural
history” of late stage syphilis without treatment. PHS doctors
also told nearly 200 controls—men without the disease—that
they were being cared for with the same simple medications. In the end
624 men were in the Study (some were switched from the control to the syphilitic
category). The only permission asked for was the right to autopsy the bodies
after the men had died in exchange for payment for a decent burial.

Doctors and a nurse connected to the county health department,
the venerable black educational institution Tuskegee Institute (now Tuskegee
University) and the Tuskegee Veterans Administration Hospital (now the Central
Alabama Veterans Health Care System—East Campus) provided assistance,
did the x-rays, tests, and autopsies. Given the complexity of syphilis,
many of the men survived their disease while others were felled by it. Those
still infectious could have passed it on to wives or sexual partners, and
through them to a fetus in utero.

The Study went on for forty years between 1932 and 1972, through
the Depression, the second World War, the Cold War, into the civil rights era,
as a changing number of administrators, doctors and nurses made it possible.
It began at a time when there was “modern treatment” for syphilis
with heavy metals (forms of mercury, arsenic and bismuth) and continued into
what is usually considered the curative penicillin era of the post World War
II years. It was finally ended in 1972 because of a public outcry over the
failure to inform the men of their disease or to really treat them.

Q: Did the doctors inject the men with syphilis?

No. There
is absolutely no evidence that the men were given or injected with the bacteria
that causes syphilis. Syphilis is extremely difficult to transmit except through
sexual contact, from a mother who is infectious to her child when she gives
birth, or from a wet nurse to a baby or an infected child to a wet nurse. The
photographs of the doctors drawing blood in the Study are sometimes misinterpreted
as showing the men begin given the disease. This is not true. The photographs
of the spinal taps in the Study (used to diagnosis neurosyphilis) are not pictures
of the injection of the disease.

Q: What exactly is syphilis and its history?

Syphilis is a sexually transmitted disease that is passed from person
to person from contact with sores that contain bacteria. Known by many
names, including the great pox, lues venerea, orbad blood, it
was dreaded for nearly half a millennium until the age of modern antibiotics.
Debates linger over where syphilis, caused by the spiral-shaped treponema
pallidum bacterium, first appeared. It is seen as the disease of
the “other” brought to the New World by Columbus’s
debauched men or, it is as strongly argued, taken to Europe in their
bodies as a form of biological revenge. It first came ashore in Naples
and then swept through country after county in the endless wars of the
early 16th century causing “the syphilization of Europe” and
acquiring its label as the disease left behind by marauding armies
of strangers.

Over the
next five centuries, the disease's "natural history" began
to be mapped, although many medical debates ensued, and its transmission modes
acknowledged. While the disease's virulent effects on human
bodies changed over the centuries as disease and host accommodated
to one another, by the 20th century knowledge of its phases was beginning
to be understood even as debates raged over this complex disease.
In its earliest and most contagious stage, syphilis is primarily
passed through sexual contact. The bacterium can also enter a fetus
or an infant at birth through its infected mother, or transfer from
a syphilitic infant to a wet nurse. In adults, a few weeks after
the spirochetes enter the body, a chancre or primary sore that is
often not painful or even noticed appears, usually at the point of
exposure on a penis, in a vagina or anus, or on lips. Infected fetuses
can become stillborn, die as infants, or develop as children with
blindness, deafness, abnormal nose and teeth formations, and neurological
complications.

Several
weeks to months later, either before or after the sore disappears,
the disease enters its second stage. An eruption of lesions in the
form of a rash occurs more generally across the body accompanied
by weakness, headaches and severe pains. This too abates and with
it the disease’s ability
to be passed along to others. In the third stage, there is a latency
period where no visual signs of the disease exist and the health
of the individual does not seem in jeopardy. This may last anywhere
from several years to decades to the rest of the life of the infected
person.

Once
this latency ends, however, in late latency the spirochetes can attack
almost any organ or structure of the body. Syphilis was an ugly and
loathsome disease made more so by the stigma of its primary transmission
through sexual contact and its ability to emerge years later elsewhere
in the body, causing a sufferer’s eyes to be blinded, a heart to stop, or a mind
to be obliterated. Received medical wisdom when the Study began posited
racial and sexual differences affected the disease’s path, with African
Americans “expected” to have more cardiovascular complications
while various neurological defects were supposed to be felt by whites.
(The evidence in the end does not support these differences, however.)

Treatments
began as soon as the disease emerged. Mercury as a cure for skin diseases
was imported to Europe from Arabic physicians by the early 1500s and used
extensively along with a host of other herbal, medicinal and biologic agents
from guiac tree bark to sarsaparilla tonics. Its usage led to the adage, “A
night with Venus, a lifetime with Mercury.” By the early 20th century,
the spirochete had been identified, blood tests to determine its presence
seemed to make certain diagnosis possible, and German research led to the
focus on arsenic compounds as the “magic bullet” for the disease.
By the l920s, months of treatment with various combinations of heavy metals—mercury,
arsenicals, and bismuth—shaped what was seen as the “modern” treatment,
especially for the early stages of the disease in adults, while a focus
on fever therapies, particularly the introduction of malaria, was thought
to aid in treatment of neurosyphilis.

By the time
the study began in 1932, concern over treatment, debates over racial
and gender differences, and the problematic accuracy of the blood
tests filled medical journals and texts. It was becoming clear that
not everyone died from the disease or even became seriously sickened
by it. From a public health perspective, as Surgeon General Thomas
Parran argued in 1938, “with one or two doses
of an arsphenamine, we can render the patient promptly non-infectious, not
cured.” The medical debates continued for the next decade until it was
found that the new “miracle” drug penicillin could usually
eradicate the disease in its earliest stages and perhaps even in
latency if the
organ damage had not yet been done. Even after penicillin, the study
continued for another three decades until media attention and public
outcries brought it to a close.

Syphilis
is a sexually transmitted disease. It is not hereditary, that is it cannot
be passed down from one generation to another. It has to be passed either through
sexual contact (penis, vagina, anal, oral), or from an infected breast to a
baby, from an infected baby to a wet nurse, or from an infected mother to her
child at birth. It is therefore called a congenital, not a hereditary,
disease.

Q: Did the PHS doctors think they were harming the men?

No. The
PHS doctors thought they were helping because there was a medical debate over
whether or not to treat those who were in the late latent stage of the disease. Many
doctors believed the heavy metals treatment, although commonly used, might
actually be harming not helping. Others thought that in an under-served
area like rural Alabama the men would not likely to be treated after they passed
out of the infectious stage.

By the time penicillin became available after World War
II individuals in the Study might have been helped by it. Others
might not have because the damage the disease did to their bodies
could no longer be fixed by penicillin. Some
of the PHS doctors also believed that doing this kind of research was necessary
to understand the disease. It was also common at the time not
to ask for formal written informed consent or to really explain to
either subjects or patients exactly what was being done.

Q: What happened to the men's wives and children?

The PHS
was supposed to only select men who could no longer pass the disease on to
others because they were in the late latency stage. This may have not been
true. When the Study ended there were 22 wives, 17 children, and 2 grandchildren
who tested positive for syphilis. They received lifetime medical
and then health benefits from the CDC (Centers for Disease Control). The last
widow of one of the men in the Study died in 2009.

Q: Did everyone who had syphilis in the Study die from it?

No. The
disease can affect differing organs of the body and can cause other illnesses
and death. It used to be called “the great imitator” because its
affects looked like numerous other diseases. Its damage to the body varies
by individuals. Even with the available medical records, it is not clear exactly
how many of the men had their lives shortened and their health compromised.

The reports
and medical files reveal the damage: up until the last years of the Study
those who were assumed to have syphilis did much worse than the controls.
Life tables created in 1955 showed that at least for the younger men in the
Study, aged 20-50, those assumed to have syphilis had a 17% shorter life
expectancy. They became sicker and died sooner (the controls on average at
70 and the untreated and inadequately treated syphilitics at 65).

The initial
news stories, based on the published articles, estimated at least 28 of the
men and as many as 100 “died as a direct result of untreated syphilis” while
other accounts circulate that make it appear as if all the men died from
the disease. Given that the categories for how to report cause of death shifted
over the years, the failure to have records on the men who passed away after
the Study closed, and the differences between the autopsy reports and tissue
data, we will never know this number exactly. From the medical records syphilis
was the cause of death in at least 16 of the men.

Q: Did the men ever get treatment during the Study?

At the beginning,
the PHS did provide some treatment then stopped it due to lack of funds. They
then circulated names of the men in the Study to local physicians and tried
to keep those eligible for the draft during World War II from the armed forces
where they would have been treated. However, over the years as many of the
men still living left Macon County, or the Study faded into the background,
some of the men were able to get treatment elsewhere without the knowledge
of the PHS. The evidence for some of their treatment is available in their
medical records at the Southeast Regional National Archives in Morrow, Georgia. This
treatment may or may not have changed the course of the illness in individual
men. After the Study ended, any of the men still alive who agreed to
government assistance were given penicillin. They then received life
time medical and then health care paid for by the U.S. government.

Q: Was the Study a secret?

No. There
were more than a dozen reports about the Study published in major medical journals
and it was taught in medical schools. The term “volunteer” was
used in several of the reports so it is possible to read them and assume that
the men knew what they getting into rather than being deceived.

Q: How many men were involved?

We will
never know exactly how many men were involved in the maltreatment that occurred.
The PHS recruited nearly all of the men (81%) between 1932 and 1934. Others
were found over the years, with the largest group of another approximately
18 added in 1938 and 1939. The published reports give conflicting numbers from
a high of 634 to the usually quoted figure of 399 subjects and 201 controls,
giving a total of 600 as a round and memorable number. The CDC’s final
count in 1974, based on the medical records, is 427 with the disease and 185
controls, plus 12 controls switched to the syphilitic arm for a total of 624.

Q: Why only African American men?

There had
been an earlier 20th century study done in Oslo, Norway that suggested lack
of treatment in the later stages of syphilis would not be as harmful as once
thought. Because the PHS and other physicians assumed the disease was
different in African Americans, they believed a study in the United States
of black men would provide differing data. Men were chosen, rather than
women too, because it is easier to see a syphilitic lesion (sore) on a penis
rather than inside a vagina. Women, if in the primary and secondary stages
of the disease, could possibly pass it on to a fetus if they were pregnant
and the PHS was concerned in this way about congenital syphilis.

Q: Why in and around Tuskegee, Alabama?

The Study
grew out of syphilis control and treatment program run by the PHS and the Rosenwald
Foundation that took place in six counties in six different southern states
between 1929-1931. This was a demonstration project to show how surveillance
and control of syphilis could be done in rural and mostly black counties. It
ended when both the PHS and the Rosenwald Foundation ran out of funds during
the height of the Depression. Given the high incidence of syphilis found
during this project, and the availability of a new health department and a
black-run hospital in Tuskegee, the PHS decided to try this new study beginning
in 1932. The Study began as a treatment program that was then halted for lack
of funds and became a research study to watch what happened when late latent
syphilis went untreated.

Q: Why is it called the Tuskegee Study?

The
formal title of the Study in its first medical publications was “Untreated
Syphilis in the Male Negro.” Beginning in 1954, the
publications after that called it “the Tuskegee Study of
Untreated Syphilis” or “the Tuskegee Study.” It
is not uncommon to name medical studies after the geographic location
where they are done. When the newspaper story on the Study
broke in 1972, the AP reporter Jean Heller called it “the
Tuskegee Study” and the term “the Tuskegee Experiment” is
often used as well.

Q: Did anyone try to stop it?

Yes. Beginning
in the 1950s, the PHS doctors received letters from other physicians and an
epidemiologist raising questions about the ethics of the Study. Beginning in
the 1965, Peter Buxtun, then a disease investigator for the PHS, began to raise
questions. He sent questions to the Centers for Disease Control (CDC)
researchers who took over running the Study from the PHS. Finally he gave his
information to an Associated Press (AP) reporter and the story went out into
newspapers across the country in July 1972. Over the next year,
there was a public outcry, a federal investigation, Senate hearings, and a
lawsuit.

Q: How was Tuskegee University (then called Tuskegee Institute)
involved?

The U.S.
Surgeon General asked Tuskegee Institute to provide care for the men, to assist
with the blood tests, x-rays, and to perform autopsies. The Study did
have the endorsement of the various medical directors of the John A. Andrew
Memorial Hospital (now closed) on the campus. Autopsies were also done
at the Tuskegee Veterans Hospital, a federal facility, now called the Central
Alabama Veterans Health Care System, Tuskegee-East Campus. Nurse Eunice Rivers
Laurie, who worked as the liaison between the men and the PHS, was a Tuskegee
Institute graduate who also did work at the Macon County Health Department
and taught nursing at the Institute while she worked on the Study.

Q: Were the men from the famed World War II Army Air Corps called
the “Tuskegee Airmen” involved?

No. Although
the first government program to train black men for the Army Air Corps was
sometimes called the “Tuskegee Experiment,” the men in the flight
training had nothing to do with the Study. There is sometimes confusion
on this because of the title of the flight program and because Laurence Fishburne
stared in two HBO movies, one about the airmen and one about the Study.

Q: Did any of the doctors receive punishment for this?

No. Many
of the doctors who started the Study had passed away or were senile by 1972. Those
living were never charged with any criminal misconduct, although attorney Fred
D. Gray sued several of them on behalf of his clients who were survivors or
heirs of the men in the Study. The case was settled out of court.

Q: Why does the term “Tuskegee” get
used to explain mistrust of doctors and a conspiratorial view of the government?

There are
many reasons. The Study went on for forty years and is considered the longest
running non-treatment study of its kind. The power of the government, not just
doctors, made it possible. The men were not told they were in a study
but thought they were being treated. Because the story of the Study
came out in the media around the time of debates over informed consent and
medical research, it is remembered. It is assumed falsely that this was
done without anyone knowing about it and that the men were also infected by
the government.

Those
who know more about African American history also link it sometimes to the
assumed racial politics of Booker T. Washington, Tuskegee Institute’s
founding principal. The Study is also taught in bioethics courses,
in on-line ethics training for researchers, and for those involved with institutional
review boards that oversee medical research. It is a word that
becomes a metaphor, or a symbol, for ways in which science and medicine ignores
the needs of patients and for racism in research. The Study, however,
is not the only example of the use of black men's and women's bodies
for research.

Q: Was there ever a formal apology from the government?

Yes. In
1996 a group of health care professionals, historians, ethicists, Tuskegee
University faculty, and community health activists formed a committee to ask
the federal government and the President for an apology. A letter asking for
the apology was sent to then President Bill Clinton. After political
pressure from other community groups, attorney Fred D. Gray, the Black Congressional
Caucus, and professionals within the CDC to honor the request, President Bill
Clinton issued the apology on May 16, 1997 in the East Room of the White House
with five of the remaining survivors, their families, and hundreds of others
present. It was covered extensively in the media, broadcast on C-SPAN,
and in a special link to an auditorium at Tuskegee University.

Q: How can I find out who was in the Study?

The names
of the men who were in the Study and most of their medical records are available
at the Southeast Regional National Archives in Morrow, Georgia. See www.archives.gov/southeast/index.html. These
are open to the public. A list of their names is available in Examining
Tuskegee.

Q: Where can I find out more information on the Study.

The major records about the Study are open to the public and are
in the National Archives in College Park, Maryland and Morrow, Georgia. Records
of the federal investigating committee are in the National Library of Medicine
in Bethesda, Maryland. The Tuskegee University Archives hold records
on their hospital and nursing programs. For more information,
see both Tuskegee’s Truths and Examining Tuskegee,
which also contain bibliographies that list other sources.

Q: Could a study like this happen again?

There are
principles and practices in place to keep this kind of study from happening
again in the United States. Researchers are held to higher standards
of informed consent and institutional review boards usually approve studies
before they can go forward. There has been concern that there are limits
to how well informed consent works and that studies similar to this may be
going on outside the United States.

Website created June 30, 2008 by Rachel Kaston and Donna Yee
Revised and expanded October 2009 by Susan D. Kunk
Maintained by Susan M. Reverby and last modified October
19, 2009